Imagine wearing long-sleeved t-shirts in 100-degree weather. Carrying packs of gauze and tape at all times because you never know when a cyst might burst beneath your clothes. Constantly smelling yourself on the sly because your body’s wounds sometimes emit foul odors.
I have done all of these things many times before because I have Hidradenitis Suppurativa (HS). I know what it’s like to live in constant fear of developing another cyst or ruining a favorite shirt when that cyst bursts. I know what it’s like to wake up in the middle of the night because leakage from a cyst demands changing the sheets immediately.
For a long time, I lived in shame. I hid in plain sight behind long-sleeved shirts and pants no matter how hot it was outside. But I am no longer ashamed.
So what changed my outlook? Let’s see, where do I begin…
I have been living with HS since I was a pre-teen, when the skin disease completely uprooted my life. Suddenly, I could no longer wear a strapless dress to the homecoming dance because my scars would show. I couldn’t wear my basketball jersey without an undershirt because I had bandaged cysts beneath both arms. I became so sick of dealing with my condition. Why me? I asked myself over and over.
No one in my family had HS, so they didn’t understand what I was dealing with. Once, when I forgot to pack an undershirt for my basketball game, my mom forced me to get on the court anyway. My anxiety was on fire throughout that game.
The anxiety attacks became more and more frequent, and I eventually became depressed because I felt so ugly. I felt as if my body was forever scarred, and I would cry myself to sleep night after night thinking about it. We live in a world where your appearance is very important, and I’d hit a serious low point. I didn’t know how to cope.
One day, however, something shifted inside me. I woke up wanting to wear a tank top, even though my scars would show as a result. Sure, I was worried that I’d be judged. Was it worth it? Would people stare at me whenever I lifted my arms? But standing in front of the mirror, I realized for the first time that my scars were a big part of who I am—and that they always would be. I knew right then that I could either learn how to deal with HS, or constantly hide from everyone and everything. So I decided to wear the tank top and try my best to feel comfortable in my skin.
At first, I was very self-conscious about my scars. I tried not to raise my arms, keeping them at my sides instead. Eventually, though, I stopped thinking about others’ opinions and just started to act naturally. When a friend asked about my scars, I casually explained why they were there and she was perfectly fine with it. She didn’t mention it ever again, and my HS didn’t change her opinion of me. This made me realize that I had been living in fear for nothing.
Finally, I felt free.
I had been limiting myself—placing myself in a box and labeling it ugly and scarred. Of course, there will always be people who stare and make comments, but the only opinions that matter are mine and those of the people I care about.
I’m the one who has to walk around with this body and deal with this disease. I’m the one who tries to smile through the pain day to day. But this disease and my scars do not define me. Now, I go to the gym in shorts and a tank top and lift my arms without worrying about people looking at me strangely.
So what advice do I have for others suffering from HS or any other condition that affects your appearance? Don’t worry about what other people think! I know that’s a lofty task, but once you let go of others’ opinions, you will feel ten times lighter. I walk around without a care and people have noticed. They see how much my confidence has grown.
Since this disease has no cure, I will have to deal with it for the rest of my life. But I’m not going to let it ruin my life, or control it. My life is my own regardless of the circumstances.